Trial By Error: Canadian Group Seeks Feedback on Recommendations for Exercise and CBT for Long Covid

By David Tuller, DrPH

A group called Canadian Guidelines for Post COVID-19 Condition (CAN-PCC) has released a new set of draft recommendations related to preventing, diagnosing and treating what is commonly called Long Covid. The current list of nine draft recommendations includes exercise and cognitive behavior therapy, which has understandably raised concerns among advocates for both Long Covid and ME/CFS patients.

CAN-PCC is seeking public comment on the draft recommendations, with a deadline of tomorrow—Wednesday, November 27^th. Submissions are not limited to Canadians. Irish psychologist Brian Hughes, a professor at the University of Galway, has submitted his own comments to CAN-PCC; he posted them as well on his blog, The Science Bit.

Here is a description of the overall project from the CAN-PCC website:

“The Cochrane Canada and McMaster GRADE Centre at McMaster University are scientifically and financially supported by the Public Health Agency of Canada (PHAC), to provide easily accessible and high-quality guidelines on PCC and facilitate their use in different settings. We will gather input from clinicians, policymakers, equity-seeking populations, and other members of the public. With their feedback, we aim to support the people in Canada with evidence-based recommendations as well as curated tools and resources to improve decision-making.”

Ok, then. I don’t have great confidence in either Cochrane Canada or the McMaster GRADE Centre—an impression compounded by the fact that navigating the website can be rather confusing, at least for me. Case in point: The site states that the group was established to create six separate guidelines related to various aspects of PCC, but also states that the current draft recommendations are its ninth such set. The site lists dozens of recommendations that it has published to date, but I can’t find any of the actual guidelines—which are presumably the source of those recommendations. Whatever.

Among the current draft recommendations for which public comment is sought, #2 is about exercise, and #8 is about CBT. (For each, the document provides a link to a review of the studies considered in developing the recommendation.) Here are some thoughts on those two.

Draft Recommendation #2

“The CAN-PCC Collaborative suggests exercise in adults with acute COVID-19 infection to prevent post COVID-19 condition (conditional recommendation, very low certainty in the evidence).”

Here’s the problem. It’s not just that the evidence the CAN-PCC team has examined is of “very low” certainly. It’s that one reason the certainty is very low is that the available studies didn’t look at the impact of exercise on PCC but on short-term outcomes for acute Covid-19. In other words, the studies don’t seem to have much, if anything, to say about the issues of concern in these guidelines. And the studies do not appear to take post-exertional malaise (PEM) into account.

Given poor evidence from a batch of irrelevant studies, what is the basis for CAN-PCC’s recommendation? It doesn’t make sense to offer a positive recommendation for exercise to prevent PCC based on data like these—even if it is accompanied by an alert that the advice is backed by “very low certainty” evidence.

To be fair, the draft recommendation does include a caveat about PEM: “For individuals where exercise worsens symptoms or there is suspicion for post-exertional malaise, exercise or rest recommendations should be made under the supervision and guidance of a health care professional.” However, since PEM is at the core of the matter, it seems ill-advised to tuck this advisory away near the bottom of the recommendation. But again, it’s not clear why this recommendation is being made anyway, given the lack of legitimate evidence to support it and real concerns about potential harms from PEM.

Draft Recommendation #8

“In individuals with post COVID-19 condition and post-exertional malaise (PEM), the CAN-PCC Collaborative suggests cognitive behavioral therapy in addition to pacing (conditional recommendation, very low certainty in the evidence).”

Again, why make a suggestion based on “very low certainty evidence”? In this case, the evidence is clearly “very low certainty,” since it includes many of the standard hits from the CBT ideological brigades. The PACE trial is a key reference, as are multiple studies from the Dutch members of the cabal. The analysis of the evidence offers little indication that the authors of the draft recommendations are familiar with the controversies around PACE and related research. Or, if they are, they have preferred to overlook these factors.

What they don’t address is that the CBT in this field—PACE-CBT, let’s call it–was developed based on the theory that the debilitating symptoms associated with the illness are due to a combination of “unhelpful beliefs” about having an ongoing disease combined with deconditioning due to sedentary behavior. PACE-CBT is designed specifically to alleviate patients of their “unhelpful beliefs” and to nudge them away from their sedentary behavior by encouraging them to push against the energy limits they feel constrain them.

Of course, there is no legitimate evidence that this works—as the PACE trial showed. In any event, pacing, as practiced by patients, is about staying within energy limits, so it is not really compatible with the kind of PACE-CBT that encourages patients to push beyond them. The two approaches would essentially cancel each other out, so combining them would seem to be nonsensical. And yet that is what this draft recommendation appears to be proposing.

Adding to the confusion, the draft recommendation itself indicates that the CBT should be tailored “to work within each individual’s energy limit.” Yet PACE-CBT was intended to promote the opposite–exceeding what patients perceived to be their energy limit. So it remains unclear what kind of CBT we’re talking about here.

While the 2021 guidelines from the UK’s National Institute for Health and Care Excellence recommend against PACE-CBT as a curative treatment based on the theory underlying PACE, they allow for other versions of CBT as supportive care—in other words, as ways of helping people cope with the reality of their condition. It is certainly possible that CBT of that sort, combined with pacing, would be beneficial in terms of mood, perspective, and quality of life. But that does not seem to be what is addressed in this draft recommendation, nor is the difference between PACE-CBT and other forms of CBT ever acknowledged.

Does CAN-PCC actually understand or recognize this critical distinction? It doesn’t appear so.